Feasibility of an Online Patient Community to Support Older Women With Newly Diagnosed Breast Cancer.

BACKGROUND: We conducted a feasibility study of integrating a free, online patient health community, PatientsLikeMe (PLM), into the neo/adjuvant care of older patients recently diagnosed with breast cancer. We assessed whether PLM was an appealing social forum to improve women's treatment experience during this stressful and often isolating time. PATIENTS AND METHODS: We enrolled women ages ≥60 years with recently diagnosed nonmetastatic invasive breast cancer at a single center. Our primary endpoint was feasibility of patient engagement with PLM, with successful engagement defined as using PLM for ≥50% of the total weeks of one's chemotherapy course or 4 months (if receiving hormonal and/or radiation therapy). Participants were surveyed about their health, social support, and experiences. RESULTS: During February 8, 2016 to June 25, 2018, 47 women enrolled; 14.9% were ages 71 to 75 years and 8.5% were ages ≥76 years; 63.8% received chemotherapy. Two women withdrew after consent; 45 were included in analyses. Overall, 1 (2.2%) patient met the feasibility endpoint, although 8 (17.8%) met engagement criteria for ≥25% of weeks on study. Over time, women submitted a total of >1200 posts to the "InstantMe" feature (rates how they feel) and >130 "MyFeed" stories. Evaluation of satisfaction with PLM was limited by the small number of end-of-study surveys. CONCLUSION: Although our online social support intervention did not meet the prespecified criteria for feasibility (required sustained PLM utilization), many engaged with PLM. Future interventions should explore ways we can optimally support older patients, who have an increasing access to technology while facing threats of social isolation.

Racial/Ethnic Disparities in Mutual Help Group Participation for Substance Use Problems.

Mutual help groups are a ubiquitous component of the substance abuse treatment system in the United States, showing demonstrated effectiveness as a treatment adjunct; so, it is paramount to understand whether they are as appealing to, and as effective for, racial or ethnic minority groups as they are for Whites. Nonetheless, no known comprehensive reviews have examined whether there are racial/ethnic disparities in mutual help group participation. Accordingly, this study comprehensively reviewed the U.S. literature on racial/ethnic disparities in mutual help participation among adults and adolescents with substance use disorder treatment need. The study identified 19 articles comparing mutual help participation across specific racial/ethnic minority groups and Whites, including eight national epidemiological studies and 11 treatment/community studies. Most compared Latinx and/or Black adults to White adults, and all but two analyzed 12-step participation, with others examining "self-help" attendance. Across studies, racial/ethnic comparisons yielded mostly null (N = 17) and mixed (N = 9) effects, though some findings were consistent with a racial/ethnic disparity (N = 6) or minority advantage (N = 3). Findings were weakly suggestive of disparities for Latinx populations (especially immigrants, women, and adolescents) as well as for Black women and adolescents. Overall, data were sparse, inconsistent, and dated, highlighting the need for additional studies in this area.

Evaluation of preventive, supportive and awareness building measures among international students in China in response to COVID-19: a structural equation modeling approach.

BACKGROUND: Education institutions promptly implemented a set of steps to prevent the spread of COVID-19 among international Chinese students, such as restrictive physical exercise, mask wear, daily health reporting, etc. Success of such behavioral change campaigns largely depends on awareness building, satisfaction and trust on the authorities. The purpose of this current study is to assess the preventive, supportive and awareness-building steps taken during the COVID-19 pandemic for international students in China, that will be useful for planning such a behavioral change campaign in the potential pandemic situation in other parts of the world. METHODS: We conducted an online-based e-questionnaire survey among 467 international students in China through WeChat. The data collection duration was from February 20, 2020 to March 10, 2020 and we focused on their level of awareness, satisfaction, and trust in authorities regarding pandemic measures. Simple bivariate statistics was used to describe the background characteristics of the respondents along with adoption of the partial least squares-structural equation modeling (PLS-SEM) as the final model to demonstrate the relationship between the variables. RESULTS: In our study, the leading group of the respondents were within 31 to 35 years' age group (39.82%), male (61.88%), living single (58.24%) and doctoral level students (39.8%). The preventive and supportive measures taken by students and/or provided by the respective institution or authorities were positively related to students' satisfaction and had an acceptable strength (ß = 0.611, t = 9.679, p < 0.001). The trust gained in authorities also showed an acceptable strength (ß = 0.381, t = 5.653, p < 0.001) with a positive direction. Again, the personnel awareness building related to both students' satisfaction (ß = 0.295, t = 2.719, p < 0.001) and trust gain (ß = 0.131, t = 1.986, p < 0.05) in authorities had a positive and acceptable intensity. Therefore, our study clearly demonstrates the great impact of preventive and supportive measures in the development of students' satisfaction (R2 = 0.507 indicating moderate relationship). The satisfied students possessed a strong influence which eventually helped in building sufficient trust on their institutions (R2 = 0.797 indicating above substantial relationship). CONCLUSIONS: The worldwide student group is one of the most affected and vulnerable communities in this situation. So, there is a profound ground of research on how different states or authorities handle such situation. In this study, we have depicted the types and magnitude of care taken by Chinese government and educational institutions towards international students to relieve the panic of pandemic situation. Further research and such initiatives should be taken in to consideration for future emerging conditions.

Natural Language Processing Reveals Vulnerable Mental Health Support Groups and Heightened Health Anxiety on Reddit During COVID-19: Observational Study.

BACKGROUND: The COVID-19 pandemic is impacting mental health, but it is not clear how people with different types of mental health problems were differentially impacted as the initial wave of cases hit. OBJECTIVE: The aim of this study is to leverage natural language processing (NLP) with the goal of characterizing changes in 15 of the world's largest mental health support groups (eg, r/schizophrenia, r/SuicideWatch, r/Depression) found on the website Reddit, along with 11 non-mental health groups (eg, r/PersonalFinance, r/conspiracy) during the initial stage of the pandemic. METHODS: We created and released the Reddit Mental Health Dataset including posts from 826,961 unique users from 2018 to 2020. Using regression, we analyzed trends from 90 text-derived features such as sentiment analysis, personal pronouns, and semantic categories. Using supervised machine learning, we classified posts into their respective support groups and interpreted important features to understand how different problems manifest in language. We applied unsupervised methods such as topic modeling and unsupervised clustering to uncover concerns throughout Reddit before and during the pandemic. RESULTS: We found that the r/HealthAnxiety forum showed spikes in posts about COVID-19 early on in January, approximately 2 months before other support groups started posting about the pandemic. There were many features that significantly increased during COVID-19 for specific groups including the categories "economic stress," "isolation," and "home," while others such as "motion" significantly decreased. We found that support groups related to attention-deficit/hyperactivity disorder, eating disorders, and anxiety showed the most negative semantic change during the pandemic out of all mental health groups. Health anxiety emerged as a general theme across Reddit through independent supervised and unsupervised machine learning analyses. For instance, we provide evidence that the concerns of a diverse set of individuals are converging in this unique moment of history; we discovered that the more users posted about COVID-19, the more linguistically similar (less distant) the mental health support groups became to r/HealthAnxiety (ρ=-0.96, P<.001). Using unsupervised clustering, we found the suicidality and loneliness clusters more than doubled in the number of posts during the pandemic. Specifically, the support groups for borderline personality disorder and posttraumatic stress disorder became significantly associated with the suicidality cluster. Furthermore, clusters surrounding self-harm and entertainment emerged. CONCLUSIONS: By using a broad set of NLP techniques and analyzing a baseline of prepandemic posts, we uncovered patterns of how specific mental health problems manifest in language, identified at-risk users, and revealed the distribution of concerns across Reddit, which could help provide better resources to its millions of users. We then demonstrated that textual analysis is sensitive to uncover mental health complaints as they appear in real time, identifying vulnerable groups and alarming themes during COVID-19, and thus may have utility during the ongoing pandemic and other world-changing events such as elections and protests.

Support preferences for Arabic people with a chronic condition living in Australia: A descriptive survey.

Chronic diseases are becoming increasingly common and are a priority for action in the Australian health sector. This study investigated the models of support groups preferred by Arab Australians living with chronic conditions. Two hundred fifty-one Arab people with chronic conditions completed a descriptive survey. More than half of participants thought that information on palliative care, financial advice and guidance, social and emotional support for self and family, complementary therapies, and being involved in treatment decisions were extremely useful. Conversely, information about palliative care, financial advice and guidance, and complementary therapies was seen as least useful. Eighty-five percent of participants reported willingness to attend a support program. Participants indicated they preferred the program to be held at a local community organization and facilitated by health care professionals. There was a high level of agreement in the views of Arab participants about the preferred location, type of facilitator, and content of a support program. These findings should inform the design of future programs for Arab immigrants with chronic conditions.

Participation in microfinance based Self Help Groups in India: Who becomes a member and for how long?

INTRODUCTION: Microfinance is a widely promoted developmental initiative to provide poor women with affordable financial services for poverty alleviation. One popular adaption in South Asia is the Self-Help Group (SHG) model that India adopted in 2011 as part of a federal poverty alleviation program and as a secondary approach of integrating health literacy services for rural women. However, the evidence is limited on who joins and continues in SHG programs. This paper examines the determinants of membership and staying members (outcomes) in an integrated microfinance and health literacy program from one of India's poorest and most populated states, Uttar Pradesh across a range of explanatory variables related to economic, socio-demographic and area-level characteristics. METHOD: Using secondary survey data from the Uttar Pradesh Community Mobilization project comprising of 15,300 women from SHGs and Non-SHG households in rural India, we performed multivariate logistic and hurdle negative binomial regression analyses to model SHG membership and duration. RESULTS: While in general poor women are more likely to be SHG members based on an income threshold limit (government-sponsored BPL cards), women from poorest households are more likely to become members, but less likely to stay members, when further classified using asset-based wealth quintiles. Additionally, poorer households compared to the marginally poor are less likely to become SHG members when borrowing for any reason, including health reasons. Only women from moderately poor households are more likely to continue as members if borrowing for health and non-income-generating reasons. The study found that an increasing number of previous pregnancies is associated with a higher membership likelihood in contrast to another study from India reporting a negative association. CONCLUSION: The study supports the view that microfinance programs need to examine their inclusion and retention strategies in favour of poorest household using multidimensional indicators that can capture poverty in its myriad forms.

Effects of the appearance care program for breast cancer patients receiving chemotherapy: A mixed method study.

BACKGROUND: Treatment of breast cancer entails surgery, often followed by chemotherapy. Alopecia is a major, intractable side effect with potentially profound impacts on appearance. We developed a nurse-facilitated program targeting appearance-related symptoms. AIMS: This study explored the effects of the appearance care program on quality of life (QOL). The program was delivered across three sessions, each involving personal reflections on appearance concerns, short lectures on skincare and makeover techniques, and small group discussions. METHOD AND RESULTS: Seventy-two women who attended the appearance care program were invited to participate. We employed a mixed-method design combining quantitative and qualitative methods. QOL instruments were used to measure effects of the program at the first and final sessions and at a one-month follow-up. The qualitative data were collected as open-ended notes regarding participants' perception of the program at the final session and at a one-month follow-up. Fifty-seven women completed all three sessions. Of them, 55 participated in this study. Their mean age was 46.4 years; 39 (70.9%) had partners, and 34 (61.8%) had children. Most participants experienced hair loss at one-month post-program; however, cancer-specific QOL improved after attending the program. Patients' experience of fatigue and weakness may explain observations of decreased physical well-being. Emotional well-being continued to increase 1 month following the program, while social and functional well-being was consistent. Participants felt empowered by the information on skincare and cosmetic techniques and valued the intimate support from the group members facing similar circumstances. CONCLUSIONS: This study showed that the appearance care program increased or maintained the well-being of participants. Findings suggest the appearance care program which promoted group sharing experiences empowered participants and may have enhanced their coping strategies.

Sustaining consistent condom use among female sex workers by addressing their vulnerabilities and strengthening community-led organizations in India.

INTRODUCTION: Between 2014 and 2017, a program aimed at reducing HIV risk and promoting safe sex through consistent use of condoms sought to work through addressing social and economic vulnerabilities and strengthening community-led organizations (COs) of female sex workers (FSWs). This study examines if the program was effective by studying relationship between strengthening of COs, vulnerability reduction, and sustaining of consistent condom use behavior among FSWs. METHODS: We used a longitudinal study design to assess the change in outcomes. A three-stage sampling design was used to select FSWs for the study. Panel data of 2085 FSWs selected from 38 COs across five states of India was used to examine the change in various outcomes from 2015 (Survey Round 1) to 2017 (Survey Round 2). The CO level program pillar measuring institutional development assessed performance of COs in six domains critical for any organization's functionality and sustainability: governance, project management, financial management, program monitoring, advocacy and networking, and resource mobilization. Overall, 32 indicators from all these domains were used to compute the CO strength score. A score was computed by taking mean of average dimension scores. The overall score was divided into two groups based on the median cutoff; COs which scored below the median were considered to have low CO strength, while COs which scored above or equal to median were considered to have high CO strength. Multivariable regression modeling techniques were used to examine the effect of program pillars on outcome measures. RESULTS: Analyses showed a significant improvement in the strength of the COs over time; percentage of COs having high strength improved from 50% in 2015 to 87% in Round 2. The improvement in CO's strength increased financial security (Adjusted Odds Ratio [AOR]: 2.18, p<0.01), social welfare security (AOR: 1.71, p<0.01), and socio-legal security (AOR: 2.20, p<0.01) among FSWs. Further, improvement in financial security led to significant increase in consistent condom use with client among FSWs (AOR: 1.69, p<0.01) who were members of COs having high strength. Sustained consistent condom use was positively associated with young age (<30 years), ability to negotiate with clients for condom use, membership in self-help groups, high self-efficacy, self-confidence, and client solicitation in streets and brothels. CONCLUSIONS: Improving financial security and strengthening FSW led CO can improve sustained and consistent condom use. In addition, the program should focus on enhancing ability of FSWs to negotiate with clients for condom use, promote membership in self-help groups and target FSWs who are 30 years or older, and soliciting from homes to sustain consistent condom use across all FSWs.

Examining contextual and relational factors influencing perceptions of societal and interpersonal mattering among rural youth.

Researchers have shown that interpersonal and societal mattering have important implications for adolescent development. Yet, few researchers have focused on what predicts mattering, particularly societal mattering, and even fewer have studied mattering among rural youth. Thus, the purpose of this study is to explore how perceived contextual and relationship factors affect rural youths' perceptions of societal and interpersonal mattering. Participants for this study were 381 middle school youth from two rural school districts in Michigan. Using structural equation modeling, we found that more positive perceptions regarding opportunities for youth involvement, availability of community resources, student input in decision-making at school, and support for autonomy at school were associated with greater perceptions of societal mattering. In addition, greater support from friends, higher quality parent-child communication, and more parental involvement were associated with a greater sense of interpersonal mattering. This study identifies important relational and contextual factors that can be enhanced in an effort to foster greater perceptions of interpersonal and societal mattering among rural youth, and ultimately help us to promote positive youth development.

The Impact of Patient Support Programs on Adherence to Disease-Modifying Therapies of Patients with Relapsing-Remitting Multiple Sclerosis in Germany: A Non-Interventional, Prospective Study.

INTRODUCTION: Disease-modifying therapies (DMTs) in multiple sclerosis (MS) are chronic therapies, and patients are likely to face challenges in adhering to DMT dosing regimens over time. DMT manufacturers offer patient support programs (PSPs) to increase adherence. PSPs are managed offerings typically encompassing nurse services, phone services, online resources, or mobile offerings. This study evaluated whether PSPs have a positive impact on adherence to DMTs among patients with mild-to-moderate relapsing-remitting multiple sclerosis (RRMS) in Germany, independent of the treatment duration on DMT. METHODS: This was a non-interventional, prospective, cross-sectional, multi-center study with patient-reported outcomes. Patients reported their DMT adherence using patient adherence questionnaires at four visits during an observation period of 24 weeks; PSP participation for this period was reported at the last visit. The primary objective was to evaluate the impact of PSPs on adherence across different DMTs by comparing patients with PSP participation versus no participation; adherence was defined as not missing a single dose of DMT. RESULTS: One hundred eighty-four patients were analyzed (mean age: 44.6 years; 73.4% female; mean time on DMT: 7.2 years). Adherence across DMTs was significantly higher for PSP participants (92.9%) compared with non-participants (61.8%) (P = 0.0197). The observed rate of PSP participation (7.6%) was significantly lower than reported in earlier studies (P < 0.0001); PSP awareness among patients analyzed was low (22.3%). CONCLUSION: We consider this study to have shown that PSPs have a positive impact on adherence to DMTs in MS, independent of the treatment duration on DMT. The majority of PSP participants also believe in this positive effect. PSP participation and patient awareness were low, and real-world adherence levels were found to be higher with self-injectable DMTs than with oral DMTs. In summary, physicians should actively advise patients with MS to participate in PSPs and, together with their patients, consider achievable real-world adherence under different DMTs when deciding MS treatment strategies.

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer.

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer.Design: Secondary qualitative data analysis.Sample: 58 family caregivers of hospice patients with advanced cancer.Methods: Template analysis of individual family caregiver interviews.Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging.Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.

Indian Cancer Patients' Needs, Perceptions of, and Expectations from their Support Network: a Qualitative Study.

Psycho-oncology research in India reveals that family caregivers and oncologists are primary medical decision-makers frequently acting on behalf of the patient. Thus, patients are rarely asked about their wants and needs. This study aimed to understand Indian cancer patients' needs and expectations from their support network. Twenty-six cancer patients participated in semi-structured interviews exploring patients' needs, perceptions of their support network and the type of support they would prefer, and their experiences of receiving this support. The interviews were analyzed using Interpretive Phenomenological Analysis. Emergent themes included: (i) role of the oncologist: being the primary medical decision-maker, communicating in a style consistent with patient preferences; (ii) role of the immediate family: being emotionally available, helping with navigating the hospital system, aiding in medical adherence; (iii) role of relatives and friends: giving advice and providing tangible aid and services; and (iv) role of other cancer patients: helping with coping with the illness. The study highlights Indian patients' ability to define their supportive network and assign specific roles to them. The study implies the need to develop communication training programs and peer-to-peer support groups to address patients' unmet communication needs and aid in coping.

Trajectories of social resource use among informal lung cancer caregivers.

BACKGROUND: Social support is a key component in maintaining cancer caregiver well-being, and many resources exist to facilitate caregivers' use of social support (eg, cancer support groups). This study sought to determine how informal cancer caregivers use social resources over the course of caregiving. METHODS: The data are from the Comprehensive Health Enhancement Support System study of informal caregivers (n = 202) of patients with recently diagnosed lung cancer. Caregivers self-reported their sociodemographic and caregiving characteristics and social resource use over 6 months. Generalized additive models were used to assess social resource use over time, and generalized estimating equation logistic regression models were used to assess the correlates of social resource use. RESULTS: Nearly two-thirds of caregivers reported any social resource use. The most prevalent social resources were faith-based groups (38%) and social clubs (30%). Only 1 in 4 caregivers participated in a formal resource such as counseling (11%) or a cancer support group (6%). Social resource use was lowest immediately after the diagnosis and increased over time. Formal resource use exhibited a nonlinear association with time such that formal resource use peaked approximately 9 to 10 months after the cancer diagnosis. Caregivers were more likely to report social resource use if the patient also reported social engagement. CONCLUSIONS: This study has found that many cancer caregivers do not use social resources, although social resource use increases over time after the cancer diagnosis. Because of the association between social engagement and well-being, this information may inform future research and interventions to improve outcomes for cancer caregivers and their families.

Family Readiness Groups: Helping deployed Army National Guard soldiers and their families.

Many have espoused the benefits of Family Readiness Groups (FRGs) for families of deployed soldiers. These include fostering family well-being (main effect) and buffering the family against the negative effects of stressful life events (moderating effect). Yet, few published studies have tested these hypothesized relationships. Survey responses gathered from returning deployed Army National Guard soldiers (N = 4,568 soldiers in 50 company-sized units) gave the opportunity to test hypothesized benefits of FRGs, both main and buffering effects. Half the sample of soldiers reported their families as having used FRGs. Two-thirds of the soldiers reported FRGs as being helpful to their families. On the whole, results supported hypotheses: More effective coping among family members was associated with FRG use (main effect), and FRGs appeared most beneficial to spouses who experienced more stressful events (buffering effect). FRG use and its associations with helpfulness to family and with family coping suggest FRGs are important resources for families of deployed soldiers, in particular, for families of reservists. Future directions for research and practice are proposed.

A qualitative exploration of SMART Recovery meetings in Australia and the role of a digital platform to support routine outcome monitoring.

Previous research has reported on the benefits of mutual support groups. However, such groups do not routinely collect data on participant outcomes. Moreover, the effect of collecting outcomes measures on these groups is unknown. The objective of this mixed methods study was to elicit participant views on using a novel, purpose built digital platform for routine outcome monitoring (ROM) as a standard component of a mutual support group. SMART Recovery, or the Self-Management and Recovery Training program, is group-based and uses professional clinicians to facilitate discussion and foster mutual support for a range of addictive behaviours, alongside Cognitive Behavioural Therapy and Motivational Interviewing techniques. This paper reports on the qualitative component of this study and how participants perceive ROMs, and the potential shift to technological resources. Twenty semi-structured telephone interviews were conducted with participants from SMART Recovery groups across New South Wales, Australia. Participants discussed their use of mutual support within group meetings to manage their recovery, including: naming their goals in front of peers; learning from clinicians and group discussion; and developing reciprocal and caring relationships. They also described any previous experience with routine outcomes measures and how digital technologies might enhance or hinder group function. Participants valued mutual support groups and reported that digital technologies could be complementary to physical, weekly group meetings. They were also concerned that the introduction of technological resources might pose a threat to physical meetings, thereby risking their access to mutual support. Findings have implications for the implementation of ROM when delivered via digital mechanisms, and indicate threats and opportunities that warrant consideration for future initiatives.

Long-Term Social Reintegration Outcomes for Burn Survivors With and Without Peer Support Attendance: A Life Impact Burn Recovery Evaluation (LIBRE) Study.

OBJECTIVE: To examine differences in long-term social reintegration outcomes for burn survivors with and without peer support attendance. DESIGN: Cross-sectional survey. SETTING: Community-dwelling burn survivors. PARTICIPANTS: Burn survivors (N=601) aged ≥18 years with injuries to ≥5% total body surface area (TBSA) or burns to critical areas (hands, feet, face, or genitals). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The Life Impact Burn Recovery Evaluation Profile was used to examine the following previously validated 6 scale scores of social participation: Family and Friends, Social Interactions, Social Activities, Work and Employment, Romantic Relationships, and Sexual Relationships. RESULTS: Burn support group attendance was reported by 330 (55%) of 596 respondents who responded to this item. Attendees had larger burn size (43.4%±23.6% vs 36.8%±23.4% TBSA burned, P<.01) and were more likely to be >10 years from injury (50% vs 42.5%, P<.01). Survivors who attended at least 1 support group scored significantly higher on 3 of the scales: Social Interactions (P=.01), Social Activities (P=.04), and Work and Employment (P=.05). In adjusted analyses, peer support attendance was associated with increased scores on the Social Interactions scale, increasing scores by 17% of an SD (95% confidence interval, 1%-33%; P=.04). CONCLUSIONS: Burn survivors who reported peer support attendance had better social interaction scores than those who did not. This is the first reported association between peer support group attendance and improvements in community reintegration in burn survivors. This cross-sectional study prompts further exploration into the potential benefits of peer support groups on burn recovery with future intervention studies.

Finding Users' Voice on Social Media: An Investigation of Online Support Groups for Autism-Affected Users on Facebook.

The trend towards the use of the Internet for health information purposes is rising. Utilization of various forms of social media has been a key interest in consumer health informatics (CHI). To reveal the information needs of autism-affected users, this study centers on the research of users' interactions and information sharing within autism communities on social media. It aims to understand how autism-affected users utilize support groups on Facebook by applying natural language process (NLP) techniques to unstructured health data in social media. An interactive visualization method (pyLDAvis) was employed to evaluate produced models and visualize the inter-topic distance maps. The revealed topics (e.g., parenting, education, behavior traits) identify issues that individuals with autism were concerned about on a daily basis and how they addressed such concerns in the form of group communication. In addition to general social support, disease-specific information, collective coping strategies, and emotional support were provided as well by group members based on similar personal experiences. This study concluded that Latent Dirichlet Allocation (LDA) is feasible and appropriated to derive topics (focus) from messages posted to the autism support groups on Facebook. The revealed topics help healthcare professionals (content providers) understand autism from users' perspectives and provide better patient communications.

The utility of stuttering support organization conventions for young people who stutter.

BACKGROUND: Stuttering Support Organizations (SSOs) are places where people who stutter can share their experiences with stuttering and lend support to each other. There is evidence that SSO participation may be helpful in reducing the negative impact of stuttering and promoting positive cognitive and affective changes in adults who stutter. The benefits of participating in SSO organizations for young people, however, are currently unknown. PURPOSE: This study investigated the relationship between attending a multi-day SSO convention and cognitive and affective changes among young people who stutter (YPWS). METHODS: Twenty-two YPWS (ages 10 to 18) were recruited from the 2016 FRIENDS annual convention to participate in this study. FRIENDS is the National Association of Young People Who Stutter. A mixed methods approach was used to collect and analyze quantitative and qualitative data. The Overall Assessment of the Speaker's Experience with Stuttering (OASES) was administered at three times points: pre-convention, post-convention, and three months following the convention. Semi-structured interviews were conducted with seven participants to further explain the quantitative results. RESULTS: Analysis of OASES scores across the three time points indicated that there were significant decreases in the negative impact of stuttering between pre-convention and post-convention measures. Qualitative analysis of semi-structured interview transcripts revealed five themes related to community building, collaborative learning, cognitive and communicative changes, self-acceptance, and normalizing stuttering. CONCLUSION: SSOs may be beneficial in reducing the negative impact of stuttering and should be considered a potentially valuable addition to traditional therapy for stuttering.

Education, counseling, support groups, and provider knowledge of total laryngectomy: The patient's perspective.

PURPOSE: Studies over a 40 year period have reported inadequate education and counseling for persons with laryngectomy; however, several long-term trends, including centralization of laryngectomy surgeries in major teaching hospitals, the rise of the internet, and the increased use of the tracheoesophageal prosthesis (TEP) for voice all have the potential to improve this situation. This study investigated if persons with total laryngectomy reported receiving adequate education and counseling before and after their laryngectomy, and how this varied by gender, geographic setting, communication method, and time. It also examined who participated in in-person and online support groups, and what health care providers and settings are perceived as most knowledgeable about laryngectomy. METHODS: This research was a cross-sectional study, with 200 participants meeting the inclusion criteria. Results were analyzed via descriptive statistics, Pearson chi-square test, McNemar's test, Fisher's exact test, and one-way ANOVA with post-hoc analysis. RESULTS: About half of persons with total laryngectomy reported receiving adequate education and counseling pre- and post-surgery, with men being more likely to report adequate education than women, and persons using a TEP for voice more likely to report adequate education than persons using alternate communication methods. Most participants (71%) participated in support groups, with women more likely to participate than men. Participants in rural areas were less likely to participate in in-person support groups than those from suburban or urban areas. Participants using a TEP as a communication method were more likely to participate in in-person support groups than those using other communication methods. Doctors, speech-language pathologists (SLPs), the internet, and support groups were highly rated sources of information. Among health-care providers, ENTs and SLPs were rated as the most knowledgeable, and primary-care physicians, dentists, and emergency medical technicians the least. CONCLUSIONS: There continues to be a need for adequate education and counseling both before and after surgery. This education and counseling may need to continue for months or years post-surgery, due to the traumatic nature of the laryngectomy procedure. Doctors and SLPs can play a leading part in providing education and counseling, and with other health professions and in-person and online support groups also having a role to play. Frontline health care providers are perceived as having low knowledge of laryngectomy.